Last October, I wrote an article on this blog about my experience living with spina bifida, and explaining some of the ways it affects me. In retrospect, I’m glad I did it, because it turned out to be very clarifying to my own friends and family who were not too familiar with the condition and that’s exactly what I wanted. Just as I explained back then, it is a congenital malformation that happens in the first few weeks of pregnancy. It is usually caught with an ultrasound before a child is born, as was my case. This is the part I wanted to get into for today's post.
For context, my mother was five and a half months pregnant and went in for a routine ultrasound. Her regular doctor was out of town and so another, much younger doctor was sent in to replace him. As soon as he noticed that something was wrong, he seemed to panic and briefly had someone else come in to confirm his findings without telling my parents what was happening. When he finally did tell them about the diagnosis, he completely forgot about bedside manner and coldly told them that I would never walk, talk or do anything independently, which even back in 1997 was completely outdated information about the condition and an unrealistic worst-case scenario. I would be “like a plant”, (now I’m quoting his words verbatim). He then left my parents alone in the room, terrified, and it wasn’t until two torturous weeks later that my mother’s doctor returned and he finally gave them a more definitive diagnosis and explained it to them in more detail, putting them at ease and letting them know that what I had was something I could live with. It was only then that they were able to relax and get excited for my arrival.
I have heard my diagnosis horror story many times over the years, and as I have grown I now realize how important it is that healthcare professionals are trained to deliver these news in a way that does not leave those parents scarred for the rest of their lives. That doctor probably forgot my parents' faces the next day, but to them his face will forever be ingrained in their memories as the symbol of a traumatic experience that they did not need to go through. If receiving a prenatal diagnosis is hard enough, being treated with such callousness only adds insult to injury, and it can even lead a couple to abort their child based on fear and misinformation if their medical team only focuses on the negatives, instead of providing them with resources, support and updated information about the condition in question. I wish I could tell the young substitute doctor who was so unprofessional that he can and should do better, but we found out a few years ago that he has since passed away. Still, I hope others can learn from it.
Today marks 25 years to the day I got diagnosed, and I wanted to reimagine this experience from my own perspective, thinking about how it should have been. A while ago I asked my mother what she wishes she had heard back then, and based on that I started writing a letter, speaking as my present self but addressed to her in the aftermath of those events, when she felt scared, hopeless and overwhelmed.
Dear Mom:
Today you've probably received the worst news of your entire life. I’m coming to the world with a health condition that you barely know anything about, and I overheard how the doctor gave you the news in a way that was not exactly pretty. There are probably a million thoughts racing through your head right now, and you’re feeling completely overwhelmed. And you know what? I get it. Your hopes of a healthy baby are out the window, the life you had pictured for me is dashed. But here’s the thing: though you’re not having the same child you imagined, you are still having one. Allow me to introduce myself and give you a little glimpse into what lies ahead.
You don’t know this yet, but I’m a girl (you will find out in a couple of weeks). I will have the same arched eyebrows as you and the same full lips as my dad. I will get my first tooth at four months old. The first time you hear me giggle will be on Mother’s Day, and when I start talking I’m going to call anything that is round a “grape”, regardless of whether it is an olive or a pea. At one point I will engage in a gibberish shouting match with another baby on a plane. Did I mention I will also love flying? My biggest fears will be my dad’s drill when I’m little and earthquakes when I’m older. I will have the ability to move my nostrils, and you will find it really funny. From a very early age you will notice how curious I am, and how eager I will be to learn new things. When I’m three and a half I will be able to recognize over 50 different car brands just by seeing the logos. I will be an excellent student throughout my school years, and I will graduate at the top of my class. I will speak five languages, three of them fluently, by the time I’m 20 years old.
Of course, I’m not saying everything is going to be easy. Some days are going to be hard, and you need to be emotionally prepared for that. You will see me being wheeled away to surgery more than once, and your heart will ache each time like that of any mother. As I get older and realize that I’m not like everybody else, you will have to answer when I ask you why I cannot run around with my peers. People will stare and point at me in the middle of the street, even adults, and other children will make fun of me and say cruel things to me in school. You will have to be my advocate in many situations, and later teach me how to defend myself from discrimination and demand that my rights be respected. As I grow into my teens, and my frustration over being different becomes too much, there will be fights between us where I will yell at you for having me knowing what I would have to go through when you could have simply gotten rid of me instead. Even as an adult, some days I will still struggle with my sense of self-worth, and need you to hold me in your arms and comfort me.
What I’m trying to tell you is: it will be challenging, but not impossible. It may feel like that at times, but it is not. Sooner or later I will have to face the challenges that come with being disabled in an ableist world, but with your love and support I will be able to get through these obstacles no matter how hard they get. At the end of the day, I will need the same things from you as any healthy daughter: care, attention, comfort, encouragement, acceptance and, most of all, unconditional love. It is OK to be scared, but things will get better. You don’t know you have it in you, but I know you do. You are already the best mother I could have ever asked for. I cannot wait to meet you from the outside. See you in November!
With love,
your daughter.
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